Why is it so hard?

Why does it all have to be so hard? 

I am pretty frustrated at the moment. I think I’m upset because up until now, we’ve actually had it pretty easy. We have gotten what we needed for our son with some elbow grease but not needing advocates, and lawyers, and what not, you hear so many people complaining about in the Special Education community. 

I am not saying we have not had to hold our ground and not let the school district push us around, but for the most part, when we showed muscle, they backed down. 

My lil man, well he is now transitioning to middle school. He is almost done with the 5th grade and we are trying to work with his IEP team to find the right fit for him next year. This time however, we are dealing with ego’s and agenda’s that have nothing to do with our son. His current SDC teacher has been pushing the district to create a program for kids with behavior issues in the middle school (and possibly high school environment) for 3 years now. What an admirable thing in my opinion. I think there SHOULD be a program like his in the middle and high schools. Absolutely. I just don’t think my kid should be in it, and especially because it will be at that school. Yes, I said “that school.” I have heard horror stories about how the student body treats kids with special needs, and how the administration doesn’t really do anything about it. It is a culture at some schools, to treat Special Education students with lack of empathy and no respect, and thus, the fight. 

I think this program my son is in now, the one they want to start in the middle school, has done wonders for him. I also feel like it has possibly restricted him in some ways the past couple of years. However, because I can not clone my child and run him through both paths at one time to see which one is best, I have to trust my gut. 

The current program was a pilot program. My son has been in it for several years. Five to be exact. First through now 5th grade. The program has adapted and changed along the way. However, at some point we feel it has failed our son. I can’t tell you the exact moment it happened. I don’t think it happened intentionally. I surely, don’t think it happened with malicious intent. I do not blame the teacher or administration for the fact that it happened. However, I am a realist and I can not ignore the fact THAT IT HAPPENED. Somewhere along the line in this pilot program, my son missed his window to seperate himself from the group of kids. They all came into the program together, they are all giving the same guidelines, homework, and treated the same… Somehow.. his IEP turned into a GEP (GROUP education plan). ONE out of the 5 of them moved to full time mainstream only,  ONE. There was a moment when our son could have been moved, we asked that he be moved, they chose NOT to move him. We didn’t fight it, we should have fought harder. We didn’t. 

So now, here we are. 

At a point where I have never been more perplexed about what to do in my life. 

I do not know WHAT to do. Literally. I am frozen. I am frozen in fear, I am frozen in worry. I am frozen in self-doubt. I am frozen in blame, and shame. I am frozen in every single possible emotion that is available to me for I feel as though my child’s ENTIRE future is riding on this ONE decision: What program is best for Steve, at which school and at what level of engagement. 

There are times when I just want to explode. Like literally, internally com-bust, the pressure is so much. Pressure from so many sources. My kid, even though he has no clue he is doing it, pressures me into doing what is best for him since he can’t do that himself. My ex-husband, again unknowingly, puts pressure on me to do all the research and to “know everything” and inform him as to what is the best path. My ex-in-laws and the family…. I can’t even get STARTED on how much pressure they put on me.  My own family who literally has NO CLUE about what I am even going through raising my two kids with ADHD (and my son who also has autism). The pressure from the school and the IEP team who only shares PART of the information with me, then expects me to make corrections and additions. None of this even compares to the amount of pressure I put on myself. 

I just do not see why it all has to be so hard.

There is a child, who is named Steve, who has learning disabilities, several of them. Steve needs help with his education. Period. Why is it so hard to find what is best for Steve?

It all seems so simple to me, so why do we all have to make it so damned hard. Well you see now, his teacher , who is the leader of his IEP team, wants him to continue in HIS behavior program because that’s how he positioned it to the district, THESE KIDS, need this program, they are all moving on to middle school and will not survive without it. And while yes, my son DOES have some behavioral issues, they are now 90% or more concentrated in the area of academic unpreparedness (remember i mentioned ego’s and agenda’s, yeah that!). Steve no longer, rolls on the floor and can’t sit still and listen to the teacher. He does listen for the most part, at least that’s what his daily behavior report is telling me. He now has a harder time staying engaged and focused in class and getting his ideas in his head out onto paper. The “behaviors” have come to virtually none in a day, or even several weeks. So I am not seeing how a behavior program is suited for him anymore (especially when said Behavior program, is at a school that does not take seriously the treatment of its Special Education members, as I’ve been told by MULTIPLE people). 

Would this program be a better option if it were located in the ONE middle school in the district that has the BEST handle on special education I have ever seen (I’m not kidding, EVER SEEN!). Absolutely, however… isn’t there always a “however,” – that school already has a Special Education program for Autism. 

So I look into THAT program since my son also has an autism diagnosis. 

Only problem, that school wants and needs the recommendation of his IEP team for the program. The IEP team who told me, they didn’t even know a single thing about that program in the district and who are pushing their OWN new program and who basically told us that if we opt not to put our son in this new program, that his life will be completely ruined and he may even get kicked out of school because that is what has happened to some of the other kids they’ve seen. Yeah, THAT IEP team. You think THEY will make the right choices for my son? (ok I’m taking a breath now… breathing innnnnn breathing ouuuuuuuuuuut… sorry about that! I digress). 

Ohhhhhh… But wait… I thought WE were “members” of the IEP team? Do “We” not get a VOTE on this? And As his parents, shouldn’t our vote count MORE than your vote? It is just so darned frustrating. 

Why does it have to be so hard and complicated?

 

~me 

 

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Why Not Tell Them?

I’ve been meaning to write this for a while now but you know… LIFE got in the way. I have come across a lot of different ways parents who have children on the spectrum operate. Some love ABA, some hate it. Some believe gluten free and other dietary restrictions are necessary, others do not. Some believe in and swear by medication others refuse to even use the word. 

One thing though I have never come across in all my book  reading, blog scouring, face-booking, tweeting etc is a parent who “doesn’t discuss the autism.”  Well, until now. 

When I say she doesn’t discuss the autism, I mean just that…. they (the parents) have simply chosen not to discuss autism with their son. Their son, he is verbal. He is 10 and a Gate student. In the “not discussing it” with their son this also means they don’t discuss it among adults either for weary that their boy may overhear something. 

I have to say, this encounter was pretty strange for me. 

My son has known her son for a very long time. Her son, when his ABA therapist was over, would invite my son to come and play together during their pre-school years for social skills work. The boys ended up at different elementary schools and summer camps. Simply by chance the boys ended up at the same camp this time.  Its been 4 years since we’ve seen them. 

When I ran into this familiar person, I asked Steve, “Do you remember him?” Steve replied, “not really.” I wasn’t surprised, I’ve noticed that very few details have stayed in Steve’s eye from when he was a small child. Thinking that Steve would like to know he had someone around that was like him, I said, “Well, he has autism like you. You two were very good friends at one point. Maybe you two can be good friends now” and his mother gasped. “Ohhhhh she says to Steve, but we don’t talk about that okay. So don’t use that word around him.” All Steve asked next was, “Does he have ADHD too, mom?” So I replied softly, “No, he doesn’t just autism but they don’t talk about that ok. Can you not bring that up? “Ok Mom, I won’t” he said. 

So Steve trotted off to his buddy whom he doesn’t remember and the mom and I head out. Once out of earshot of the boys I HAD to ask the question. “What do you mean you don’t talk about it?” I am thinking in my head… not talk about it… I can’t stop talking about it. I talk to anyone and everyone that will listen and even some that don’t about it. I live and breathe this every day. This THING, autism, has invaded our home, our everything… how can you NOT TALK ABOUT IT….. I stayed quiet to listen. 

She replied matter of factly, “Oh that’s easy, we decided we were not going to discuss it for fear of him using it as a crutch or excuse. That’s all.” Uh oh… here goes my mind again: that’s ALL… THAT’S ALL… that’s not all. How can that be ALL. That is no where NEAR ALL. What about how he feels inside? What about… and WHAT ABOUT………. and so I said oh, okay and walked away then got in my car. What else could I do, I was about to blow. 

Steve has over the past year been coming to me more and more asking me why he is different. What is happening? Why can’t he  do what his brain tells him to do? So it clearly was time for us to sit down and have this conversation. 

I am adopted and it was never kept a secret from me. I have never kept the word autism a secret from my son. Its not a bad word. Its a matter of fact. 

At first I thought it was my misunderstanding. That I had suddenly missed another HUGE issue in the autism community and I didn’t want to start a fight. When I got back to my office I sat down and really started to think about this. Have I not read enough? Is this really a thing? I know it is in the adopted community… but autism community? There are people who just will not tell their child what is happening to them inside their bodies?

I don’t know… so I am writing this bewildered still, even after a couple of weeks. I just don’t think I understand the concept of not telling your child about something happening inside of them. 

So…. am I seriously sheltered, nieve and misinformed? Is this a “thing?”  If you do know of  why this would be a thing, can you please enlighten me? Clearly I need it, because I really do not understand. 

 

Help me… 

~me